The first time Medicaid saved my little family of three is impossible for me to forget. Other times followed, but the first one was by far the most important.

When You See “Medicaid” What Do You Think?

I think of this: I was living in Brooklyn, 32, out of work with two babies – the first, a toddler and the second, two months old. Both, diagnosed with a rare disease just after newborn screening. In the process of finishing my science degree and looking for my next job, I applied for Medicaid for myself and my two daughters.

I had no savings, no assets, but a lot of hope.

At the Medicaid office a staff person assured me the application would be successful; I do not know her name but can’t forget her. 

I lost self-control and broke down in tears. I had not cried in public in I don’t know how many years. Many. The promise of health insurance was such a tremendous relief.

“No one in my family ever asked for help before,” I said, trying to calm down.

The kind, middle-aged Black woman helping me was short and soft-spoken. She was naturally beautiful with long brown curls. She lay her lovely manicured hand on my arm and said gently, “Plenty of people have. There’s no shame in it. You’re doing the right thing for those two kids.”

“But to the government.”

“Government’s people, honey,” she interrupted. Then she smiled graciously at me and said slowly, “We’re here to help. That’s what we do. Help people going through a rough time.”

I was so grateful for her. And I thought she did not hate her job.

It’s one of the stories I share in my mom memoir, When the Baby Is Not OK: Hopes & Genes, published February 2025.

Medicaid also Means Survival

Now, when I see the word “Medicaid” I think of survival, and I think of hunger.

This is because in my family two out of the three of us have a rare disease that requires an unbelievably expensive, medically-prescribed nutritional formula as their food. And I think of disability. Because access to that costly medical food for my family’s health condition, named phenylketonuria (PKU), makes the difference between living a healthier life or living with disabling symptoms that were totally preventable.

Treating PKU through diet began in the 1960s, and is widely considered a triumph in modern medicine and for genetics. A medical diet prevents symptoms; after newborn screening started, a child with PKU who has access to care would be as healthy as their siblings without PKU may have been. But not if their family can’t get the prescribed formula.

Without prescribed treatment, it’s another story.

Having PKU may cause intellectual disability, seizures, delay in development, behavioral and emotional problems and mental disorders. For a pregnant person, it may cause their baby to be born with heart problems, a small head and low birth weight.

These mental and physical effects come from not having access to specialized medical care. And that care is expensive, without health insurance. It is more than the monthly cost of rent, in my family’s case – and I live in New York City. It is a lot.

How Will People with Rare Conditions Access Health Care?

More than half of the people diagnosed with PKU through newborn screening don’t go back for medical care of their condition as adults. Many adults with PKU have said the reason was lack of health insurance. More and more people are losing their health insurance these days because of high costs. How will they find care in the future, if access is limited even further by taking away Medicaid benefits?

Not going back for clinical care as adults means people don’t have access to the medically prescribed formula or nutritional shakes they need in order to live healthier lives. They are – right now – likely experiencing the pain and neurological, physical, mental and social effects that can result from living with untreated PKU.

As many as 1 in 5 of the US population now rely on Medicaid for access to the health care they need.

I’m pretty sure the people involved in making – and changing – rules governing the program are not among them. 

Maybe if more of those responsible for Medicaid policy had been without health insurance for a time, and had managed to get on Medicaid when they most needed it like I did, things would be going differently.

Please consider sharing your personal story!

What does Medicaid mean to you?